Mighty Life List
Dec 29 2010

Get Health Issues in Hand? Let’s talk.

A few years ago, I was pretty sick — sleeping 17-20 hours a day, covered in hives, nightmare dental issues, joints not working, dust and moths billowing out my mouth when I coughed, that kind of thing.

I needed to address it, but the symptoms snuck up on me so gradually that I wasn’t conscious of how bad my health had gotten. I was overwhelmed by how many doctors appointments I needed, which is how “Get my health issues in hand” eventually made it to my Life List. But in the meantime, I made sidecars and baconsteak for dinner, while maintaining a strict regimen of sitting still at a keyboard.

I’ve resisted going into my health issues too much here, because I like this site to be a kind of scrapbook of stuff I want to remember. “Oh my sciatica” doesn’t make for great memories or memorable reading. But as I’ve slowly returned to life among the ambulatory, I thought some of you might like to know how. So if you’re into that, keep reading. If not, here’s that video of a kitten being surprised repeatedly.

——–

My extended family has health struggles. (Hi, family!) One by one we’ve developed exotic autoimmune disorders, and one by one we go to doctors who first say nothing is wrong, then eventually stick a close-enough label on our symptoms and begin treatment. As a group, we’ve been diagnosed as having Maybe Chronic Fatigue Syndrome, Probably Lupus, Possibly Chron’s, Could Be Epstein Barr, Looks Like Fibromyalgia, Arthritis, plain old allergies, and, the old standby in the face of medical confusion — hypochondria.

A few years ago, I started getting hives that looked like mosquito bites all over my torso. I ignored it, because I am stupid. Then they moved to my face, at which point vanity sent me to the doctor who sent me to an allergist. The allergist said I was “sensitive” to a zillion things, so I tried to cut all that stuff out of my diet, which didn’t work.

I eventually figured out that wine and caffeine exacerbated the hives, so I tried to eliminate those. Then I tried getting rid of gluten, then pesticides, and then dairy. Then I sobbed uncontrollably while my joints ached and people asked if I had chicken pox.

Around this time, Heather wanted to do the Oprah cleanse from Quantum Wellness with a group of us who were doing an online book club together. The cleanse meant:

- Adopting a vegan diet with no meat, dairy, or eggs.
- No gluten — so no breads, pastas, crackers, or joy
- Cutting out caffeine and booze
- Eliminating refined sugars (yes to fruits, no to snorting crushed cookies)

So essentially, you can have air. And quinoa.

Anyway, the cleanse made a lot of the girls sick, supposedly because their bodies were clearing out toxins or something. One the other hand, I went from sleeping 17-20 hours a day to bedtime at 3 a.m., sleeping four hours, and awaking refreshed on no caffeine. My hives cleared up, my joints felt better, my skin was amazing. And suddenly I realized how grave my situation had been.

Let’s talk more about that tomorrow. That and cute dresses. Break!

36 Responses to “Get Health Issues in Hand? Let’s talk.”

  • Maureen Says:

    I was wondering what became of all that. Glad you feel good enough to talk about it now. See you tomorrow!

  • Dana Says:

    Whoa! Wish you hadn’t stopped. I was settling in to read about the medical mystery. Looking forward to tomorrow’s installment.

  • Maile Says:

    I’m so grateful that you’re sharing this. I’ve been having weird issues too, and just ignoring them, because I am stupid. Can’t wait to hear the rest.

  • Allison Says:

    I have been thinking about this a lot lately – I have been diagnosed with fibromyalgia (7-8 years ago), and have been ignoring it while in grad school, raising a (now) 5 year old, and being the primary breadwinner for our family (because my husband has Crohn’s)… but I am 8 months pregnant and have developed the WORST pelvic pain – really the worst consistent pain I’ve ever been in – due to ligament separation issues. I’m hobbling like an 80 year old and don’t really want to ever leave the house or change out of my pajamas. And I have a baby coming! I haven’t talked about it with people too much (but I feel like here Maggie will understand when I say “Let’s talk about my pubic area!”) Supposedly the pelvic pain will get better postpartum, but this whole episode has made me think I need to get the chronic pain/achiness/other random symptoms under better control, because I never want to feel like this again. I started going to a pain clinic, finally – it was a 5 month wait for an appointment – and they’ve got more options for me after I’m done breastfeeding, and of course I know there are alternative therapy options, but they also said they’ve got counselors on staff to help people deal with their pain issues. At first I thought no way, but now I’m thinking *something* has to help me get more motivated to deal.

    That’s my extremely long brief version of my story. Looking forward to the discussion.

  • Cassie Says:

    I think you are probably the only person in the world who could make health issues interesting. Fascinated!

  • Nicole Says:

    I’ve just discovered what taking a really good vitamin can do for you . . . friend gave me some GNC women’s ultra mega for christmas, have been taking one pill (half the dose) for 4 days now and I already have way more energy, better hair, and can concentrate way more! Its crazy what good chemistry can do . . .

  • Meegan Says:

    You’re leaving us hanging? I hope you do finish tomorrow because I, like so many others, love you and your writing and wish you the best. The best being the health of you and your family. Be well!

  • Maggie Mason Says:

    Maile! Do not ignore your weird issues, girl.

    Allison, I’m so sorry, that’s the crappiest. I had some nerve pinching issues in the pubic area with Hank that made it hard to walk, but nothing like what you’re going through. Sometimes, it’s that little extra bump of miserable that finally gets us to start doing good things for ourselves. I hope it clears up post baby.

    Nicole, I am supplemented UP. Agreed.

  • Amy Says:

    I actually am really looking forward to the rest of this topic. I love hearing about other people’s finicky bodies and how they deal with them as a learning opportunity and inspiration for me to deal with my finicky body. My list of irritating and ignored symptoms keeps getting longer. :(

  • Mercedes Says:

    please do continue….

  • jillian Says:

    I am looking forward to the rest of this entry. Much of my family has weird medical issues, and it can be difficult to talk about.

  • Brittles Says:

    Pardon the misery maniac in me, but you TOTALLY left me hanging. What was it that worked? Did you do elimination and add slowly add certain foods in your diet? I need MORE.
    Since being diagnosed with Ulcerative Colitis a few years ago, I’ve sort of become a freak about other peoples’ health issues.
    I’ve cut most dairy out of my diet, don’t drink more than a couple swallows of beer at a time, and my old friend the majestic bell pepper had to hit the road (among other things). I’ve recently come upon a never ending sore throat and a break out of spots all over my back and torso. Please, do go on.
    On a lighter note, I thoroughly enjoyed your surprised kitten video. Might just have to mosey on over and watch that one again…

  • Hannah Says:

    Wow, that cleanse sounds intense! Glad to hear it worked for you.

  • Ris Says:

    I can’t wait to hear the rest. I’ve been struggling to give up caffeine myself.

  • Lauren Says:

    As a fellow autoimmune illness freaky symptom sufferer, I can’t wait until the next installment and hope the fact that you are writing about it now means you have reached a place of wellness or at least stability.

  • Shevon Says:

    I’m excited to hear the rest!

  • Meg Says:

    How have we not talked about this more than we have? This is like the story of Meg, minus the hives. I have Looks Like Fibromyalgia (kinda), and others in my family have others of these. I’m slowly healing though. Today brought news that my Vitamin D levels were finally at human being levels, for example. There is a lot more yoga in my future (lunchtimes!) but it’s slowly getting better.

    And thanks for talking about it. It’s really hard to be in that group of people that doctors think are hypochondriacs. Once they told me I was sick because I was depressed. “But I’m not depressed!” I argued. “Well are you sad that you’re sick?” “Yes?” Them “Told you!” So I was sick because I was depressed that I was sick. Excellent. I cancelled my follow up appointment.

  • Jennifer Says:

    I’m with Cassie: you ARE one of the few writers on the interwebs that can make “I’m sick again!” interesting reading. So yay for me, the reader. Not so much for you, the sufferer, so now I feel guilty…

    As others have said, I’m rethinking my health situation because of a couple of (currently) minor (that can see major from where they’re standing) issues, plus I’m a 44-year-old single mother of a 5-year-old, and being healthy and fit is kind of critical. So much as I’m sorry for the reasons you’re posting about your medical issues, I’m glad to read about your perspectives and look forward to hearing about the outcomes!

  • NicoleT Says:

    I’m with everyone else – GIVE US MORE!

    You have been a role-model for me (and, I think, all of us!) – that you live life to the fullest and take all of us and your family along for the ride! That you’ve done all the things you have even while dealing with health issues is motivation/inspiration/impressive!

  • Rebecca Says:

    Maggie, so glad you are feeling better. There is little more frustrating than putting yourself in the hands of doctors only to have them shrug and go “meh, dunno really”. The last time I went to the doc for Random Nervous System Issue, he said “you’re probably anxious, unless it’s multiple sclerosis”. Um, let’s go with anxious. (He does think I’m anxious; I don’t have the requisite signs for an MS diagnosis, but DUDE. Really. DUDE.)

  • Cindy Says:

    I did that diet for a week. At the end of the week I realized that I could do with out meat and really gluten (it causes my lips to be flaky and I peel them). Gluten was too hard to keep completely free of my diet, so that’s kind of stayed. I just eat less. I have been migraine free for two years. I don’t know how much of my new diet contributes to this or if it’s my new yoga lifestyle. I suspect a combination of things. Any way. It’s nice to find an answer.

  • Jen Says:

    I am so facinated by your story of THE cleanse. I’ve never wanted to do a cleanse (I have zero will power and I really like coffee. No, I really like it. I want to marry coffee and have it’s babies. I’d never cheat on coffee. Ever. OMFG, COFFEE!) But reading Heather’s experience was so interesting. I’ve honestly never heard of a real person (as in the person who didn’t design the cleanse) do it and enjoy it. I’ve heard of people who did it and it almost killed them (Heather) and people who did it and muscled through it and survived, but no one who did it and was like, “maybe this will change my life…”

    Cannot wait for part 2…

  • Kat Says:

    I gave up caffeine last February, and have only slipped up a couple of times, all for chocolate. I decided, recently, that chocolate for the holidays was OK, but that the rest of the time, the no caffeine rule would have to stick.

    I sleep so much better now, and I wake up without a lot of issues in the morning. I used to drag out of bed, having not slept well (if at all) and have to have at least one cup of coffee or tea to get me even awake.

    I have also done that cleanse, at least once a year for the last few. It is amazing how much better I feel during and after it. The lure of delicious fried things always gets me back, but when I start to drag and feel like my body is not running at it’s best, I always come back to that cleanse. It’s like a jumpstart. :)

  • Heather Says:

    ah, the no-gluten lifestyle. it’s only bearable for me because i have no problem with wine.

    also, totes hanging on for the next installment!!!!

  • Roxanna Says:

    I’m writing a post about how what I really want in 2011 is more energy. I’m really working and thinking about what gives me more energy, and I’ve been very curious about trying a cleanse to see what I don’t need in my diet. Like everyone else, I’m fascinated by your story…the suspense is quite delicious in small doses, but please don’t leave us hanging!

  • Christian Says:

    Can’t wait for part deux! I am in the alternative health field, so this is really up my alley. Not that I don’t love all the cute dresses, which has kept me hooked for years now.

  • Allison A Says:

    I’ve read through ALL of the comments (not something that I traditionally do) and I feel like we all need a large group hug.

    I am a long-time (8 years) sufferer of freaky auto immune disorder shit. In fact, as I type this, my fingertips are getting numb and tingly! Whee!

    I woke up one morning after a long night of under-aged drinking and felt a tingling and numb feeling in my hands and around my lips. At first I thought that I was just hangover so I ignored it…about 6 months later while waitressing the SAME THING HAPPENED, my hands cramped up so bad (think Lobster claws) that I couldn’t pick up plates or cups and had to go home. This has continued to happen in some form or another since I was 17.

    If take too hot of a shower or do too strenuous of an exercise, my hands cramp. (bye bye running and bikram yoga!) If get too tired, my hands cramp. Sometimes my legs cramp as well! Imagine ALWAYS wearing a compression sock on your calves.

    First they tell me I’m dehydrated, then they say my b-12 levels are depleted because I’m a vegetarian (who is supplimented to high heaven). Maybe it’s a pinched nerve? Nope! Maybe it’s carpal tunnel? After much poking and prodding with needles that’s also a negative! Is it diabetes? Nope!

    What could it be?? Well finally about 7 years into my journey they decide to check my vitamin D levels and guess what? They were almost too low to even measure. At that point my new G.P. starts asking about family history (SEVEN YEARS INTO THIS) and I tell her that my sister has graves, my great grandmother had type 1 diabetes and my great-grandfater who passed away long before I was born had Multiple Sclerosis.

    Yep, he had MS and now my G.P. has planted it in my brain that I have it too! But wait you can’t diagnose it until a brain scan shows that I’ve had more than THREE attacks on my brain (whee!) and not every attack shows up in a scan which means that I could have already had 20 and only 2 of them show.

    I’m not scared or worried or even all that upset I am just like you Maggie, I have GET MY BODY BACK on my life list.

    If that’s what I have then great, let’s figure out how to keep it under control. If that’s not what I have, let’s figure it out so I can move on with my life.

    I’m really looking forward to hearing more from you about your journey, it gives me a little boost to hear someone else’s experiences.

    Also,

    ((((HUG))))

  • cheryl Says:

    i’ve found that living openly about my health issues has been a positive. it can be hard (my chronic pain is endometriosis so gets that “female issues” shroud), but it has led me to meet people who relate to and support me. i can also use it as an explanation (NEVER an excuse) for times when i’m not so chipper. i also believe that being open is the key to helping health issues get attention and helping other people to find help and strength. (an old post of mine but an intro: http://clg1213.blogspot.com/2008/12/sharing.html)

    i do the same with some eating/body issues…not quite the same thing but a similar spirit…sharing has helped me find fellow fighters and i hope it helps remove some stigmas (another old post but an overview: http://clg1213.blogspot.com/2009/07/personal-post.html)

    sharing is up to you, but i find it rewarding for me and have the hope that it will help someone else

  • Michelle Says:

    I’m hanging on for the next installment, too! So exciting to read (hopefully) about someone who overcame the treat-the-symptom world of medicine and figured things out for realz. You might also be interested in reading Balancing Everything’s blog category of “rashtastic”: http://balancingeverything.com/archives/. Hives, rashes, supplements, autoimmune weirdness galore.

  • PositivelyAnna Says:

    What a wonderful coincidence. I’m starting the Quantum Cleanse on January 1st. Thank you so much for writing about your experience and linking to others. It provides the support that I will definitely need.

    Also, take care of yourself! I have IBS and a lovely unidentified condition that makes me barf too often. But I FINALLY started going to the doctors and actually listening to them. I realized taking care of yourself is part of being an adult. You have conquered so many amazing things on your life list. I think this one will be the most worthwhile.

  • susan Says:

    I hope your quest proves worthwhile. I found out through a detox – Dr Mark Hyman’s Detox in a box that my migraines and hives and general malaise was due to gluten and too much sugar. After the cleanse it’s become a love hate thing – i love how i feel when i stick more closely to the gluten free/low sugar diet and hate how i miss the big desert fest. Boils down, for me to be a balance. Luckily I kicked the coffee habit a few years ago or that would have been a mind blower. Good luck and be well – the body sure can tell you when it’s garbage in!

  • Jessica Says:

    Can’t wait for the next installment. I too come from a family with lots of autoimmune illness spotting the family tree. I started getting achy, occasionally feverish, and tired. Not to mention the confusion. It came on so gradually that I was always able to explain it away. Until a girl’s vacation to Central America where I was never quite able to keep up with the gals – who were all my age, and similar activity level. Anyway, over the past years I’ve been bounced between “It’s definitely lupus”, “It could be lupus but it acts like rheumatoid arthritis”, “i’m not sure what that nerve pain is caused by”, “maybe we’ll call it inflammatory disorder for now” . Anyway, I’m quite interested in the details of your journey and your cleanse as well. Thanks for sharing – now get that post up!

  • Courtney Says:

    I’m officially intrigued. Thank you for sharing!

  • Franca Bollo Says:

    Can you write a bit more about your experience on the cleanse? Great series, BTW.

  • dgm Says:

    I’m fascinated by this story as well, even though I did have to go look at the surprised kitten again (and then share it with my 7 year old). I love that you have become proactive with your health. Good on ya!

  • mary Says:

    I can’t remember a time when I haven’t had a rash of one sort or another. My Mom said my first full sentence was “my skin hurts.”

    Purchasing foundation one day, the sales woman remarked that my skin was really, really, red. She suggested I consult a doctor. I brushed it off. I’m Irish. We’re ruddy folks. Fact is I had been ignoring a bunch of isolated issues, fatigue, a mottled indentation on my leg, heart palpitations, a chronic cough that is until I was hit by a car.

    The absolute worst time to discover you have an autoimmune disease? When you are in surgery. You might have a pulmonary embolism and a collapsed lung because the surgeon didn’t know he was operating on a person with a systemic disease.

    It’s not fair to your family and friends to ignore symptoms. I wish I could have those 5-10 years back when I thought I was doing a pretty good job pretending my health was not an issue.

    Don’t get too hung up on securing an exact diagnosis. Remember your goal is to feel better.